Webcast Transcript: All You Need to Know About the Use of Truvada to Prevent HIV Infection (Pre-Exposure Prophylaxis- PrEP)Nelson Vergel
(PrEP) WITH DAMON JACOBS AND NELSON VERGEL
with Nelson Vergel and Damon Jacobs. Welcome to the Power Hangout. It’s going
to be fantastic. Nelson, tell us a little bit about what we’re going to be
going through today.
First Power Hangout. We’re going to have a series of hangouts or webcasts
really every month on different topics on HIV and health. Today is our first
one and we have a celebrity with us, Damon Jacobs.
family therapist in New York City and he’s also become the national lead and
educator on pre-exposure prophylaxis or the appeal to prevent HIV. He goes
around the country, speaks in conferences. He was just done with an
international conference in Vancouver. Very well-known, he’s got a big Facebook
group, PrEP Facts. We’ll talk about it later. I’m very, very excited.
Relating and Absolutely Should-Less. Tell us a little bit about your work,
Damon, and your books, and then we’ll go for all the questions that we have. We
have a lot of questions here. By the way, I think Scott can let us know how the
audience can ask questions, too.
and family therapist in the state of New York as well as California, where I
was originally licensed. In my experience working in the mental health
profession, it seems incongruent to be a healer, to promote mental and
wellness, and we’re not looking at the systematic issues that often promote or
exacerbate grief and trauma, and suffering.
both a therapist and an educator/activist, and started talking about HIV
prevention in very explicit, blunt ways even back in the 90s when condoms were
the main message.
for the past four years. I use PrEp daily. As you said, I speak about this all
over the world, and with a Facebook group where people can ask questions and
learn more about this. That Facebook group is called PrEP Facts Rethinking HIV
Prevention and Sex.
want to thank you for I inviting me, and invite any questions from anyone who’s
listening or hearing this.
brings up a lot of reactions in people, and I completely understand a lot of
those reactions, so I want to really create a space here where people can ask
anything. They don’t have to worry about being politically correct, they don’t
have to worry about hurting my feelings, they don’t have to worry about being
offensive. I really want to invite that dialogue and ask people to ask anything
they want to ask.
hear a little bit about your books, too. Tell us [crosstalk 00:03:07]-
Absolutely Should-Less and Rational Relating. Absolutely Should-Less talks
about living in a world without the word “should,” without rigid and
inflexible expectations that we carry about ourselves, about others, about the
world. All the “shoulds” that we carry that result in depression, in
anger and resentment, and sometimes, drug abuse, and in extreme situations,
violence and suicide.
It is a very practical easy guide for any two people in a relationship or even
more than two people who might be in a relationship who want to create
negotiations and agreements, and arrangements to make the relationship full of
serenity with joy and with pleasure, and with marriage equality passing, I find
that everybody wants to talk about marriage equality. Nobody actually wants to
talk about relationships. This is the ideal book for people that are either
already in formal relationship or going towards a formal relationship.
PrEP is this idea that life is so much better if we’re proactive, if we have
the tools and the resources, and the mindfulness to think ahead about the
situations that might get in the way of experiencing joy and pleasure, and take
action ahead of time.
damonljacobs.com. They’re on Amazon. They’re on barnesandnoble.com. I think one
of them is on iTunes. Pretty much anywhere where books are sold online, you can
get them or just get them at damonljacobs.com.
Let’s get into it now. For those that don’t know anything, tell us what PrEP is
and a little background on how it came about.
pre-exposure prophylaxis. It is a medication that an HIV negative person can
use in order to stay HIV-negative in case they are exposed to HIV in the
future. It is a daily pill. The main research took place between 2007 and 2009,
and what was called the iPrEx trial, for those who want to look that up.
available in 2010, there have been several other studies that had validated the
results and also seen that this daily medication can prevent HIV somewhere
between 92% and 99%, or to put it in another way, there has yet to be single
documented instance of an HIV-negative individual using this medication daily
who has become HIV positive in any research setting in any trial, or in any
real world implementation project where people have looked to see how often
they take the med. Not one infection has occurred, so we know that this pill is
quite efficacious when it’s used in preventing HIV.
or now we have this thing called treatment as prevention which has shown the
HIV-positive people that take HIV medications and bring their viral load down
to undetectable do not infect others even if having unsafe sex. Why do we need
PrEP even though we have those two other prevention tools?
been very effective in preventing HIV and we’ve known that since 1985. Even
with that information, we still have 50,000 new infections in the United States
every year and that number has remained stagnant since 2003, so for the last 11
years or so, we did not have any significant decreases nor increases in HIV
cases in the United States. What does that say?
as they could. Rather, condoms are not the problems, it’s that people aren’t
wearing condoms. Even according to the CDC’s own statistics, most gay and
bisexual men in the United States were not using condoms even back in 2000.
that they’re wrong, and for a lot of people they are using condoms and PrEP,
but the fact that we still have 50,000 new infections in this country and that
it is significantly on the rise amongst gay and bisexual men between the ages
of 13 and 24 points to the fact that we need another tool. We need another
strategy, another way to prevent HIV, and that’s where PrEP comes in.
prevention, as you mentioned, this is fairly new, but it is very, very true
that a person living with HIV with an undetectable viral load, it seems to be,
according to all the research we are seeing that we just saw on Vancouver this
last week, is incapable of transmitting HIV, meaning, an HIV-positive person,
no viral loads, suppressed viral load, they cannot and are not transmitting
from? In the United States, it’s usually from people who don’t know they’re
HIV-positive. Most people, quite many people who are HIV-positive in the United
States do not know their status and they are without any mal-intent, not
because they’re bad, but without knowing it, are often carrying around a
detectable viral load and transmitting HIV to others. This is why we need
testing to be accessible and non-stigmatizing everywhere, and this is why we
need PrEP for individuals who could be at risk for HIV.
mentioned the word “stigma.” There are lots of stigmas surrounding
not only being gay but HIV-positive. I’m HIV-positive for 33 years and I’m gay,
and I’m an immigrant, and we all have labels, but anyways, tell us a little bit
about the stigma associated with PrEP because I see online that a lot of people
are judging those who are taking PrEP. They are calling them Truvada horse.
They’re calling them whatever, just stigmatizing the whole thing. Tell us a
little bit about what their psychology since you are an expert in the field of
all that’s shaming that we’re having now.
label that has been used against me and against anyone who is open about their
use of Truvada as PrEP is a reaction to fear, and let’s face it, all the safer
safe campaigns the last 30 years have been laded with fear. They have told
people to be afraid, afraid of sex, afraid of pleasure, afraid of intimacy,
afraid of connection, be afraid of sex without condoms, to be afraid of so many
medically proven to prevent HIV that is an alternative to what we’ve
understood, it threatens people’s sense of safety in a way. People have a
difficult time with change even when it’s good change because it means that we
have to think differently, and a lot of folks are uncomfortable thinking
health professional, this takes time, and definitely in the last three years,
there has been a change in terms of people’s ability to acclimate to this idea
of this paradigm shift around HIV prevention, and around the possibility of
someone staying HIV-negative when they’re not using condoms. Not that you can’t
use condoms, but a lot of us are not, but where people then point fingers and
label others is when they are uncomfortable with change.
survivors of the HIV epidemic in the 1980s, it makes a lot of sense that there
would be a lot of trauma and fear associate with the idea gained by sexual man
having pleasurable sex and exchanging bodily fluids without condoms.
lot of people have because they live through the worst of times and they are
still experiencing the results of that. It makes a lot of sense that PrEP will
sometimes push some buttons of issues that have come up before. We work with
that, we deal with that, but what I always say is that nobody’s fear or
labeling, or stigmatizing negates the science.
in Vancouver. I saw it online. We’re talking yesterday about pleasure and love,
and how nobody brings that up in different conferences. Everybody wants to talk
about the data, the infection rates, efficacy of Truvada or PrEP. That was very
interesting for me to hear. Can you tell us a little bit about the content of
that lecture you gave last week?
about medicine, data, science, and expanding that a little bit, when I think
about every safer sex campaign that I have seen for 30 years, it’s always about
how to avoid something you don’t want. It’s always about disease aversion and
sometimes, using fear to get people to try to use condoms which they’re not
people still are having sex even at the risk of becoming HIV-positive now. Why
did people 20 years ago still have sex without condoms even when the
consequences could potentially be death? Because people have sex for pleasure.
People have sex to feel good. People have sex to connect, to have intimacy, to
have a sensational experience.
men, even the well-intentioned doctors and researchers, and educators sometimes
forget that when you’re sitting across the room from somebody who’s at risk for
HIV, you want to find out for them what it means to have a pleasurable active
sex life, what it means for them to have value and meaning in terms of their
sexual expression. You want to be in their world, not try to get them to be in
your world if you’re talking about effective strategies for minimizing risk of
openly at these conferences because these are words that are rarely ever spoken
in medical circles, in scientific circles, in safer sex circles. We somehow
forget a gay, bisexual man, as most men and women in this world, want to have
sex because it feels good.
basic concept. I know what it talks about, so it’s very refreshing for you to
say that, but anyway-
campaigns can do somebody some damage, but anyways, there are barriers. There
are many barriers when, let’s say somebody, whoever is this I need to this
webcast, and by the way, people are going to be able to ask questions later.
Scott is going to explain how.
navigate the whole process of getting PrEP and if you have insurance or if you
don’t have insurance. We’re going to talk about that at the end, but tell us a
little bit about the different barriers, the different difficulties people are
having trying to access and get PrEP or even trying to talk to their doctors
the fact the United States is the only country whose government has approved
using PrEP, so, it’s our FDA-approved use of prep three years ago in 2012.
There’s no other country in the world right now whose government has approved
the use of PrEP [crosstalk 00:14:52]. Right, I know. I was amazed.
curve on this issue. I was very impressed by that and still very impressed by
that, but the downside is that PrEP is still not accessible anywhere else in
the world easily. People still get them through international pharmacies and
there’s ways to do it.
Rethinking HIV Prevention and Sex, on Facebook, they’ll learn about a lot of
ways people are accessing PrEP outside the US, but in the US, that is the only
country where our Medicaid is paying for it, where our private insurance is
paying for it, where the Affordable Care Act is paying for it.
partly because even though it is covered by insurance, there are some
insurances that have put up barriers, who have put up hoops that have made it
harder for people to access PrEP. It added paperwork where they’ve kind of
passive-aggressively discouraged people from using it.
now and say, “Hey, well my insurance cover PrEP,” chances are, I’m
going to get someone who answers the phone who’s never heard of this and going
to say no. This is why people want to find out. They have to call their
insurance and they have to ask, “Is Truvada on the formulary? Not “Do
you cover PrEP,” but “Is Truvada on my formulary?”
difference in terms of accessing PrEP and dealing with insurance companies, and
again, more tips like that are available at my page.
medical profession. Doctors, mostly doctors in the United States who are
sometimes, I’m going to give them the benefit of the doubt, well intentions,
doctors who care, seem to have this idea. They have a misguided concept of
cause and effect. They say if I give my patient PrEP, here she will feel like
they can go ahead and have sex without condoms. What’s the problem with that
gave up condoms a long time ago on a consistent basis. Not everybody, but most.
For a doctor to believe that here she has the power to suddenly get people to
use condoms in 2015 when people weren’t even using condoms in 1995, how much
sense does that make? How rational is that?
stopped using condoms, not the other way around, and until the medical
community gets on board with that, we’re going to see this power struggle and
that sort of problematic dynamic, power dynamic that’s coming through with
doctors thinking that they can infantilize and be mommy and daddy for their
patient who is probably just going to nod and smile, and then go the other way.
with the needs of the pleasure of gay and bisexual men, and not judging them,
not saying what you should do, but say “Here’s the reality. What are you
doing and can I help you to stay HIV-negative? Can you use condoms more often? Would
you use PrEP? Could you use both? Let’s talk about that.” Insurance and
the medical community had been the largest barriers in the United States.
still stigma in a lot of communities. People joking with their friends even
though, again, most gay and bisexual men are not using condoms 100% of the
time, but a lot of gay people would tease their friends or make fun of people
who don’t use condoms, or worst, stigmatize people who are HIV-positive. They
say that being HIV-positive some sort of character flaw. What does that do in
terms of helping people feel empowered about their sexual decisions? Not very
bisexual men, but straight people can take this, too, right?
States. It is approved by the FDA and endorsed by the Center for Disease
Control for anybody who is at risk for HIV. That could be a man, that could be
a woman. There are lots of women in the United States taking PrEP. There are at
least two women in my group on Facebook that had used PrEP to conceive a child
with an HIV-positive partner. Let’s talk about that for a second.
man married to an HIV-negative woman and you wanted to conceive a child, you
had to go through an extensive and invasive process that was very, very
expensive and not necessarily even efficacious in order to try to father a
child. It was like the sperm washing thing.
TASP, with treatment as prevention and with PrEP, male and female couples are
conceiving children naturally without all that expensive stuff, without all
that sperm washing stuff. We have two women in my group that are very outspoken
about their use of PrEP in order to conceive a child with an HIV-positive
husband. It is for men, it is for women, it is for anyone who wants to be in
control of their HIV status if they’re already HIV-negative.
partner doesn’t it? It really does.
sexually since 1989 primarily as a bottom partner [crosstalk 00:20:06]. I can
say that here. Nobody’s [inaudible 00:20:10] here, okay [crosstalk 00:20:11]?
No, we never saw that coming.
[inaudible 00:20:16] on you, but-
of that for a second. Back before, we had treatment medications. Back before,
HIV was treatable. If I was to have sex with anybody, as a bottom partner, I
was kind of getting my life [inaudible 00:20:39] somebody else because I didn’t
know if that person was truly HIV positive or negative.
with somebody who is a top, and I am dependent on that person using a condom
for me not to become positive, so I have to make sure that he is making sure it
doesn’t fall off, it doesn’t fall in, it doesn’t break, it doesn’t somehow
magically disappear as condoms sometimes do in the heat of the moment, that
means that I’ve always given the power of my health status to another person.
I take a pill every single day, and so, whether I have receptive anal sex with
a condom or not, whether I’m with a partner who is positive or not, whether he
is detectable or undetectable, I don’t get HIV. I will not get HIV according to
what I have experienced in the last four years and according to everything that
research has been telling us.
transmitted diseases, right?
How many people listening hearing this and looking at this-
clothes on. I’m sorry.
condoms for oral sex. I don’t want to say nobody does because some people do,
but most people don’t. STDs and STIs are just as transmittable through oral sex
and condoms do not protect from certain STIs depending on what you’re doing and
depending on what it is.
the verge of a herpes outbreak, that’s skin to skin contact, and that the
condom is not going to protect you. If someone is having a syphilis outbreak
and doesn’t know it, they could be contagious and you’re not going to know it.
You could use a condom and you could get syphilis easily that way.
but they don’t eliminate the risk of getting an STI. What just came out of
Vancouver this week and this was fascinating to me is that there were about a
dozen demonstration projects given. Again, demonstration project is looking at
how PrEP works in the real world in clinics all over the world, San Francisco,
Miami, DC, but also in Canada, in Brazil and Africa, looking to see how PrEP
seen an increase, a significant increase in STI infections. Now, they’re not
raising decreases either. They’re saying STI infections are pretty much staying
the same throughout the course of these studies.
of PrEP in the real world does not, so far, result in some major catastrophe
explosion of uncontrollable STI exploding around this every single place. That
but I do want to say one more thing about that. When I use PrEP in accordance
with the CDC guideline, that means I’ve seen my doctor four times a year, and
in those visits, he was making sure that I do not have any STIs.
and he’s doing an anal swab. I have to say that because it’s so important for
people. Anybody who’s getting receptive anal sex, you tell your doctor you need
an anal swab, too, because if you have, let’s say, rectal gonorrhea and you’re
peeing in a cup, and your doctor’s trying to find out if you have an STI, it’s not
going to show up. If it’s in your butt, it’s not going to show up in the urine,
so you need to ask for an anal swab.
to make sure that I don’t have an STI or if I did have an STI, that I’m not
giving it other people. Compare that to somebody who is not on PrEP. Compare
that to somebody who is not connected to health care who might be carrying
around an STI without knowing it, who might be giving it to lots of people
without knowing it. I always say that PrEP does not stop the transmission of
STIs, but it does stop the spread of STIs because of those quarterly visits.
PrEP is a program, right?
relationship with your doctor. Part of that too is that my doctor is making
sure that I don’t experience any kidney changes. About one in 200 people who
have used Truvada as PrEP have seen some changes in kidney functioning when
they have used it responsively, and so far, in every single case where that’s
happened, when the person stops taking Truvada, their kidney functioning went
back to normal, so there has been irreversible side effects from using Truvada
as PrEP, but my doctor is drawing my blood four times a year to make sure
there’s no changes. No side effects that I’m not aware of, no kidney changes.
not even hooked into the medical care system and were having unsafe sex. Now,
if they take Truvada, they’re going to have to go see the doctor [inaudible
00:25:28] I don’t think you get a refill if you miss few of the visits, right?
refill usually every 90 days.
using PrEP and went to a wonderful clinic here in New York city called APICHA,
Asian and Pacific Islander Community Health Access, for anybody in New York
city. He went to see the doctor and the doctor screened him for HIV and for any
sexually transmitted infections, STIs, and his doctor said, “Oh, you have
rectal gonorrhea. He doesn’t know how long he had it. He doesn’t know how many
people he’s given it to, but the only thing he knew was that now that he was
talking about PrEP with his doctor and he was going to be cured of gonorrhea
and not give it to anybody else. In that way, we call PrEP a gateway drug.
relationship with medical professionals. It is a gateway to controlling STIs in
our communities and it has really been an effective way of people feeling
empowered not just about sex, but about their medical health in general.
sure you. I’ve been positive for 33 years. I’ve been taking pills everyday
twice a day. Sometimes, [I think there’s 00:26:48] four times a day for that
long. Actually, I take two but as a backbone of my treatment, I take [inaudible
00:26:55] inhibitors. I take a bunch of stuff. My total cost per year is like
$60,000 on pills, so I tell people it’s cheaper to keep people on PrEP and save
them from having to go into HIV treatments where they’re really expensive.
all that, but we’re actually saving money in the long run by preventing all
those expensive HIV [inaudible 00:27:19]. Anyways, tell me, in these studies,
who actually adheres to PrEP?
study from France and Canada, I guess, right? The French that actually studied
not taking PrEP everyday, but maybe four or five times a week. Tell us a little
bit about that, too, even though it’s not approved in the United States as a
address. In terms of what you just referred to as the IPERGAY study, that’s
from France. They were the first and so far the only study to look at what we
call event-driven dosage. The question being is if you want protection from
Truvada as an HIV-negative person, do you have to take it everyday, or could
you just take it based on the events of your life?
going to have sex Friday night and I’m not going to use condom, so I want to be
protected. Could I begin taking it on Thursday and take it again Friday, and
then have sex, and then take it twice afterwards and have protection? That was
the theoretical question that was being looked at in what was called the
this year were a little bit mixed. What they found is that everybody in this
study who followed the directions and the protocol of the study, not a single
person became HIV positive. Again, another study, nobody who took the drug the
way it was prescribed to them became HIV positive.
often in the study that the average dosing in the study was four doses a week,
so when they looked at how many times people actually took the drug in a month,
it averaged four times a week. We already know that four times a week is very,
very effective. It’s more effective to take it seven days a week, but four
times a week still provides really, really strong protection from HIV if you’re
at risk for HIV.
still gives us a lot of questions. I think it was about 20% of the participants
took it less than four times a week, but they did take it for this event-driven
dosage the way I described; two doses before the event, two doses after the
event, and none of those folks became HIV-positive either. Again, the only
people who became HIV-positive in the study were people who did not take the
meds at all. What does that mean?
but for now, the Center for Disease Control recommends that anyone who wants to
use Truvada as PrEP take it daily or close to daily. Obviously, if you forget a
dose here or there, if you only take it six days a week and you skip a dose,
and you take if four days a week, five days a week, you’re still going to have
a lot of protection,.
when AIDS was a death sentence. I lost lovers and friends and colleagues to
AIDS. I grew up seeing death. I am not there. I am going to take it seven days
a week because HIV is something I want to prevent and I want to do everything
in my power to prevent HIV, and I feel most empowered doing it seven days a
that, who is this just right for it? Who is actually taking it daily? A lot of
people like myself who survived the difficult days of HIV and AIDS are people
that are using this daily or consistently on a daily basis in order to prevent
HIV. People who grew up and saw this phase right up close, who have decided I’m
not going to become HIV positive, but I still want to have these pleasurable
sensational sexual experiences without condoms. Can I do both? Yes, according
to the science now, you can.
research, and people can Google iPrEx or they can email me if they want to see
the data behind this, the people who adhered the most to PrEP were people that
were at highest risk of PrEP.
at risk for HIV. The official term used in this research study, it’s URAI. That
stands for unprotected receptive anal intercourse. The people who used Truvada
the most in all of these research studies were people that were having
unprotected receptive anal intercourse.
page a couple of hours ago, the NIH with these results of the demonstration
project that was presented in Vancouver last week that again showed
demonstration project in the US 557 participants in San Francisco, Miami, and
Washington DC, and again, same thing, those that were at highest risk for HIV,
those that recorded having anal sex as a receptive partner without condoms were
more likely to take Truvada seven days a week.
the truth or not because that could be an issue, the scientists were doing
what’s called dry blood spotting to measure adherence, so they know through dry
blood spotting that these participants were taking it seven days a week, and
the ones that were at most risk for HIV in general were taking it more often.
side effects, we talked a little bit about their kidney dysfunction issue that
happens in 1 in 100 you said.
00:33:02]. I’ve taken Truvada forever. I never had a side effect. My kidneys
are great even though I’m taking a bunch of other pills, but there are some
people that may have … They are predisposed to either kidney dysfunction or
nausea, or fatigue. Tell us a little bit about this [sort of syndrome
00:33:18]. I think that’s the term you guys are using now in the prevention
world. Does that go away or-
they take Truvada as you said. I’ve never had them. You’ve never had them. Most
people don’t, but a lot of people do and what that usually is, is nausea,
abdominal cramping, diarrhea, gastrointestinal problems, and if someone is
using Truvada everyday, in most cases, those go away within the first three
prepare their patient to say it is possible you may experience some side
effects as your body acclimates to this new medicine, and that nearly in all
cases, the side effects go away after a few weeks, and you may have no side effects
at all, but those are temporary side effects. The other one that doctors are
looking at quarterly is the changes in kidney functioning. Again, that is like
1 in 200 according to Dr. Bob Grant who ran the iPrEx trial.
they did not see a difference between the placebo or in Truvada when it came to
side effects. I saw the table, too, so actually, they-
significant between Truvada and placebo,
but still, most people still did not have any side effects at all.
it more than once a day, it’s once a day?
for me, that’s easier. My stomach will react better. Some people don’t take it
with food at all. The reason why Truvada was selected as the first drug to be
studied for prevention is because the side effects in HIV-positive individuals
are so, so rare and that it has been known that it’s a medicine that you can
take with our without food. You can take it in the morning. You could take it
at night time. You can even miss a dose and it’s still going to be very
an HIV-negative person commit to taking a drug everyday or almost everyday,
they selected Truvada because it was known to have such very little disruption
in somebody’s daily life.
few people talk about. This is my very own biased opinion. I don’t even think
this is part of their guidelines, but I am promoting the fact that every gay
man or any sexually active straight or gay person should be vaccinated against
hepatitis A and B, if they haven’t gotten it, and also, especially for young
men under 26 years of age, the HPV vaccine which is approved for younger man,
because we do have issues with HPV especially in the gay men population.
their vaccination required … Not required because they’re not required, but
to protect sexually active people from getting hepatitis A and B. C, we don’t
have a prevention vaccine. We have a treatment and got a cure now, but we don’t
have a … And that can be either some sexually transmitted data that scares
us, but not as bad as we think in the United States, but the vaccination issue,
I don’t really hear people talking a lot about that. Do you have any comments?
people what they should do with their body. I have no right and I have no
authority to tell people what they should do with their body, but when I’m
talking to someone or educating a group of people about health and wellness,
and joy and pleasure, I’m thinking about ways to maximize health and wellness,
and pleasure over the long term.
you brought up which are wonderful questions and really important. Have you
been vaccinated for hepatitis A? Have you been vaccinated for hepatitis B? Have
you ever talked to your doctor about the vaccine that’s available for anal
doctor. I’m over the hill. I’ve already been exposed according to [crosstalk
00:37:24] data, but absolutely, for younger people, it is approved in the
United States, that means insurance does pay for it. My insurance would not pay
for it because I’m too old. These are all prevention strategies and they are
just talking about using a drug to stay HIV-negative. We’re actually talking
about a shift in thinking one that’s less about disease and more about health.
be the first time in your career you really had an opportunity to talk about
healthcare [crosstalk 00:38:03] because most of the work you do is about
disease management. Most of the people who come to see you everyday are people
coping with chronic or treatable diseases whether it’s HIV or other diseases
that people are dealing with like diabetes or hyperthyroidism, but most of your
work is about treating a condition.
with somebody on actually caring for someone’s health in a proactive, responsible,
and empowered way, and what a different paradigm that is.
trained? I don’t know if Gilead, the maker of Truvada, is spending any money on
education for doctors since they didn’t really spend money in the approval
process for this drug for PrEP. It’s approved for HIV treatment, too. Are
doctors actually being educated or do they have to find information on their
provide training for doctors if they as for it, and it’s free. Gilead has
trained professionals all over the US that would go to any hospital clinic or
area when doctors asked them to.
some doctors don’t for various reasons, there’s also trainings and a lot of
information on the CDC website. The Center for Disease Control provides a lot
of information and data and training, and a hotline for doctors to call if they
want to talk to somebody about PrEP and how to responsibly [inaudible 00:39:30].
first graphic to explain the process of navigating through the whole process of
attaining PrEP? Is that possible the first graph?
there was a couple of questions.
in the right corner. There are some squares. Click in there and then you can
ask a question we’re going to answer at the end, okay?
hurt my feelings. You will not affect me.
have a question, a genuine question, ask me. Don’t ask the people around you
who might be offended or stigmatized by you.
up. Here we go. Is this the first one?
we can. I don’t know if we-
is a great summary. Project Inform, a non-profit obviously, if you guys don’t
know, in San Francisco is a National Education and Advocacy non-profit
organization put together this.
summary of the different steps that people go through to get access to PrEP and
we have a second graph that we’re going to show later on who pays, whether
insurance, if you have insurance, if you don’t have insurance, if you are a US
resident, if you don’t have a green card because there are other ways to access
this, and how much money you have to make if you don’t have insurance.
have too much time to go into details for both of them, but we will. You can go
into the Project Inform website and they have the information there, too, or
you can actually type on their Facebook search box on the top, PrEP Facts.
Actually, just typing those two words gets you to your page. I’ve done it many
times. We have more than 5000, 4500 hundred members or so?
of us answering questions there. Actually, that probably is s … But some
people don’t like showing their faces sometimes for questioning, so you can go
into to the website, but anyways-
damonljacobs.com, and my email and all my contact information is there, so
anybody can ask me anything privately if they prefer.
… We don’t have to read all these out loud because it’s too much. It will
take us forever, but briefly, the main points of each on these steps, if you
at the little corner of my screen.
then, it should come up.
process. First thing you want to do is empower yourself with knowledge from the
insurance standpoint. Again, you don’t want to ask your insurance company,
“Does PrEP get covered on my plan?” You want to ask them , “Is
Truvada on the formulary and what tier it is in,” because then, you’re
going to get a better idea about what your expenses are going to be.
used to dealing with insurance companies and medical plans, and deductibles. It
can be a little daunting in the beginning. Places like Project Inform in San
Francisco and APICHA here in New York do help people through that process, but
not everyone has access to that, and of course, they can always come to my
Facebook group if they need help, but check with your insurance plan, find a
medical provider who supports your decision. That is easy to do in some areas,
harder to do in others.
group I going on saying, “Hey, I’m on Oklahoma City. Who are the doctors
that prescribe PrEP here?” Quite often, there’s members who have already
gone through this who can help with that.
chooses to prescribe PrEP, then you are going to have your blood drawn. Before
you get a prescription, the doctor is probably going to draw blood because they
want to verify you are HIV-negative first before prescribing PrEP.
check. They’re going to do your through, your urine. If they don’t do it, and
if you ever bottom doing it your life, ask them for an anal swab. They’re
supposed to know to do it, but a lot of doctors don’t, so ask them for an anal
swab because you want to make sure you know what’s going on up in there.
filled, and you start taking it. As we said, some people have side effects when
they start, some don’t, but I think for a lot of people, what’s not on here, is
just how you begin to act and make your life to the idea that you were being
responsible every single day whether you’re sexually active or not, that you
are being proactive responsible and empowered about the pleasure that you want
to have. That’s such an important part of taking PrEP as well psychologically
next one. Let’s go into the next site which is probably the most important.
This is not a cheap drug, by the way. I think your total cost out of pocket,
retail is 1100 a month like every HIV or non-HIV drug. It’s not very cheap, but
thank God, the company has a patient assistance program and they are also is
covered by insurance in most cases, and also there is a foundation that can
help with some of the cost. Damon, can you go through this really quick?
There’s a lot of input to it and everybody can go to projectinform.org/prep,
and you will find this, but just really briefly-
information as well. There are a lot of resources and this chart is wonderful
because it takes you through the “it then” statements.
you’ll have a co-pay. Gilead will pay that co-pay up to $300 a month no matter
what your financial situation is. If you have Medicaid at any 50 states,
Medicaid will pay for Truvada as PrEP in all 50 states. If you have no
insurance, if you have zero coverage, Gilead will still pay for your coverage through
the medication assistance program if your yearly income is under the 500% of
the federal poverty level which is about 58,000 a year, then Gilead will pay
to think about enrolling, and with open enrollment coming up towards the end of
the year, if you are going to be on PrEP on the Affordable Care Act, you really
want to select a plan where Truvada is going to be properly covered.
trouble here with the Affordable Care Act is because they select a plan that
doesn’t … It has a very, very low monthly cost, but has very, very low
coverage, and they are under insured. They can’t really afford Truvada a lot of
times because they’d be paying this at like incredible [inaudible 00:47:26]
expense in order to get it.
are considered using Truvada, I would encourage you to consider either a bronze
or a gold plan.
are the two higher ones. There is assistance to the patient’s assistance
network. If you qualify for that, that’s about 4,000 a year of assistance you
or the state of New York, there are state assistance programs. If you are under
assured and you cannot afford Truvada as PrEP, the state will actually pay for
it in these two states, and I’m hoping other states will follow soon.
information here and many, many resources in order to cover Truvada as PrEP.
I’m on the Affordable Care Act. I’m on a gold plan. My usual co-pay would be
$70 a month. All of that is covered through Gilead.
covering cost too like San Francisco is doing it, right, or not? Chicago, San
Francisco, LA none?
republican governor that got elected in November and that went bye-bye.
Illinois was going to be providing state assistance for Truvada as PrEP and now
a month ago that they will be providing assistance as well. I believe San
Francisco already does, so you are seeing some specific counties where there is
a lot of risk for HIV where the counties are stepping out to provide assistance
for individuals because again, as you mentioned, Nelson, from a fiscal point of
view, the cost of treatment is a lot more than the cost of prevention. These
counties and states are actually doing themselves a huge favor by spending some
money now preventing HIV versus treating HIV down the road.
Google their closest community clinic. Every large city has community low-cost
clinics. Most of them are treating HIV, by the way, and many of them have case
managers that can navigate through the patient assistance programs, because it
can be overwhelming, so do that.
that we have the third graph so that people can find us. Damon, me, and 7000
other people from all over the country, they’re all over the world, this is is
their Facebook page, PrEP Facts.
about this valuable information that’s out there.
answer questions now. We still have five to 5 to 10 minutes maybe.
refuse to prescribe PrEP for patients who request it, if that patient
subsequently gets infected, could he or she conceivable sue their provider for
refusing to prescribe PrEP when requested? That maybe the only way to affect
speak to legal issues. As an activist, I think that would be an appropriate use
of using the legal system to make a statement. I don’t know if legally you
could win that, but certainly, from an activist standpoint, that is often how
the message has gotten through and change has occurred.
encourage you to talk to our lawyer and/or Lambda Legal, and you can google
Lambda Legal about that. I don’t know what kind of resources they could
provide, but it has not happened, but I certainly think it could, and if it
does, that might be a necessary message for the medical community to start
being responsible about how they’re reacting or not reacting to PrEP.
Facebook group and ask for a doctor in their cities because there are almost
8000 people, so chances are, somebody lives in their city that knows doctor
there that’s prescribing.
Nelson. There are still a lot of areas of the US, a lot of rural areas of the
US, a lot of smaller towns, but that’s not the case, and exactly the question
that came up, people are going to their doctors and being told no for no
medical reason, just for moral reason. Their doctors are practicing morality
not medicine, and if that person becomes HIV infected and turns around and sues
their doctor, I don’t know what’s going to happen, but I do think that will
send a loud and clear message to the medical community.
to follow FDA guidelines. They need to follow CDC guidelines, or else. The AMA
says “Do no harm.” As a doctor, do no harm. There are doctors doing
harm by refusing PrEP to people who qualify for it under the CDC guidelines.
but anyways, the next question is-
on PrEP, what happens to HIV inside the body? I understand that it does not
replicate, but where does it go? Does it die? What happens to it?
and Nelson, you might have better insight how to explain this. If you go to
whatisprep.org, they also have a video that sort of shows by taking Truvada
everyday, there’s like a coding around my T-cells and if I was exposed to HIV,
the HIV could not replicate. It could not duplicate. It could not copy itself
in my system. That is a really basic response. If you come to PrEP Facts
Rethinking HIV Prevention in Sex, there’s a lot of people who can explain it a
lot better than I can.
two medications. They are both nucleoside and analogs that really get involved
in cutting off the life cycle inside the CD4 when HIV penetrates the CD4, and
it basically cuts. They’re like scissors. They cut this reverse transcriptase.
It’s an enzyme that the virus needs to replicate itself. Truvada is actually a
combination of, we didn’t say that before, of tenofovir and [inaudible
00:53:52] together, and both are nucleoside and analog.
while taking Truvada, you’re taking it everyday and you have already taken it,
that’s another question. How long can you have protected sex after starting
Truvada? I’ve heard that anywhere from 5 to 7 doses. That’s maybe a question
that is coming up, but I don’t want to go into that, but if that-
Truvada because Truvada is protected sex.
[inaudible 00:54:28]. We actually equate it to condoms, right?
have the maximal protection for rectal sex, anal sex in 7 days, for vaginal
sex, it’s 20 days according to the CDC.
showing that women have lower concentrations of tenofovir … I don’t know if
I’m pronouncing that right … In the vaginal tract. Should women be concerned
that PrEP might not work as well for them as it has for MSN?
is recommending 20 days for vaginal tissue, that it takes 20 days for the
vaginal tissue to absorb Truvada, whereas in the rectal tissue, it’s 7 days.
They could use Truvada and have anal sex, and be protected in the anal cavity
after 7 days. These are conservative estimates. As we know from the IPERGAY
study we talked about earlier, it might actually be sooner than that, but as
our basic understanding where we’re at right now, it’s still 20 days for
vaginal sex, 7 days for anal sex. More research does need to be done as far as
how it affects vaginal tissue.
people, for the most part, have been left out of all of these trials. When I’m
talking about men and I’m talking about women, I’m talking about [inaudible
00:55:55] gender, meaning men and women who were born with the sex that they
fit into, we actually don’t know how long it takes for Truvada to build up in
the system for a transgender man or a transgender woman.
bit in research studies, but transgender men have not been included at all.
Unfortunately, there’s no hypothesis to suggest it doesn’t work just as well in
a transgender man or transgender woman, but we can absolutely say it does because
they’ve been left out.
consensus that was signed called on governments to remove policies and
legislation in order to make PrEP accessible to all. Where there any
discussions or decisions as to what specifically will be done to affect this?
talking about so many different countries. What needs to happen first is that
the pharmaceutical company needs to apply with each country’s medicine
regulation board and it’s different in different countries, but Gilead needs to
at least apply for this kind of approval in each country, and that they haven’t
always been up-to-date and stepped up to that the way they could have. Nelson
do know more about where-
really feel especially really bad for all the other countries. The Europeans
are posting a lot on the group. People flew in their countries and I have no
idea where we are when it comes to approval of PrEP internationally. Do you
have any idea what is the next country, Canada or UK? Do you have any idea?
so much research?
possible that we have such an effective way to end HIV and the US is the only
country to step up to that? It’s preposterous, but this is where were at.
their activist there were, yeah. Okay, the next question?
about pipeline of future PrEP products.
demonstration projects that are taking place around the world. Again,
demonstration project means does PrEP work in the real world. We know that
works in research trial settings, but does it actually work in the real world?
That’s the step. That’s what’s happening in the pipeline as far as
understanding Truvada as PrEP and how this is going to work.
that are currently being studied as pre-exposure prophylaxis. There’s other
drugs that are currently being studied in clinical trials. There is the
HPTN-069 study called the next PrEP study that’s currently underway in various
parts of the United States and Puerto Rico.
haven’t seen a lot of success with that. It’s something called microbicide
gels. Question, could a woman or a man use a gel in their anus or vagina and
have that protect them from HIV? We haven’t really seen it be effective yet,
but that is being studied in clinical trials, and then the other thing that’s
being studied in the pipeline right now are injectable preps.
States looking at the efficacy and safety of an actual injectable. Let’s say I
don’t want to take or can’t take a pill everyday, but I could go to my doctor
and maybe once a month or every three months get injected with something that
will keep you HIV negative. That is another option that’s being studied.
pre-exposure prophylaxis, right now, that’s synonymous with Truvada, but it
wont’ always be that way. Eventually, PrEP is going to be like a whole toolbox
of interventions for people who want to stay HIV negative.
You kind of already talked about this if someone uses it intermediately or
meaning like if they take it for a while and then stop, but they’re absent at
the same time, and then, start taking again when their not [inaudible
01:00:38], that’s just a yes to that question, right?
was designed as a strategy so that people could start and stop. Much like women
do with birth control pills, you take it when you’re at risk for an adverse
consequence in sexual pleasure. You don’t have to take it when you’re not at
risk for HIV.
know one thing, and if you remember nothing else about this, you got to
understand one thing. If you stop taking PrEP and you decide later you want to
start again, you must at least get verified as HIV-negative first. I can’t
emphasize that enough.
against PrEP out there, there’s only on agreement I have with them, and that
agreement is that it’s dangerous for somebody to start and stop on their own.
They can stop on their own, but if you’re going to restart, you must do this in
tandem with the doctor or a nurse or physician’s assistant who can verify you
are HIV-negative before you begin.
it and you use Truvada just by itself, there could be some adverse consequences
for your ability to respond to treatment down the line, so please, start
Truvada with a doctor.
to do that with a doctor. You may say, “Hey, right now, it’s summer and
I’m going to run off to Fire Island and have a lot of sex and take a lot of
loads. Once September and October come around, I’m really going to be sexually
active anymore, so I don’t really need to be on PrEP.”
going to restart for spring break next year, you must please get your
HIV-negative status verified first. If you do, we have seen no diminishment in
efficacy, it is not worth any less in your system if you stop and restart,
right? Just please do not restart without a doctor.
at least 7 days after you start again.
to need to take it for 7 days, vaginal sex for 20 days. That’s the most
conservative estimate of how effective it becomes right now with what we
understand, what the CDC is saying, right?
pre-exposure prophylaxis, but there’s a different acronym that I use when I’m
thinking about PrEP and when I’m teaching about prep, and I mentioned it
earlier, that is proactive, responsible, empowered pleasure.
means is it’s inclusive for people that are HIV-negative and it’s also
inclusive for people that are HIV-positive in terms of making the most
proactive responsible and empowered decisions about their pleasure as well
which for most HIV-positive individuals right now includes treatment as
prevention, which is TASP.
using PrEP, and for some HIV-negative people, they’re still using condoms only
without PrEP, and if they can do that 100% of the time, that’s great, but what
I’m considering is a framework for all of us to really evaluate what is the
most proactive, responsible, and empowered way that I can experience pleasure,
and that PrEP allows us to begin to ask these questions for any man, for any
woman of any background, and any HIV status.
when they are thinking about PrEP for themselves or thinking about PrEP for
others, and especially if they’re going to judge or stigmatize. I don’t think
anybody listening or re-listening to this, or watching this is judging others,
but can really just think about, “Is PrEP right for me or not? What would
it be for me to be proactive, responsible, and empowered about my
pleasure?” Then, have conversations with that or join the Facebook group
and ask questions about that.
here. Anything else you want to wrap us up or-
You’re like a star. I knew you’re the great. I appreciate it. This is going to
be available on YouTube right away, right, Scott?
post it up wherever you want all the groups. Damon, you can share it, too,
whatever you guys want to do.
this, Scott. Damon, I will talk to you later. You really have helped hopefully
thousands of people. I hope this video is watched by thousands. There is no
reason why it shouldn’t.
to find us on Facebook, on the PrEP Facts, or your own website, right, damonl
next Power Hangout?
having one of the experts on supplements in HIV. We’re going to talk a lot
about more of what I do, exercise supplements and all that. I wanted to do the
PrEP one first because it’s a hot topic. It’s a very misunderstood topic and I
have a star speaker speaking instead of me, so that’s great. Look forward to my
next postings on the next Power Hangout. It’s going to be once a month. Thanks a lot and I appreciate your
joining us and taking the time, and Damon, I will talk to you soon.