2. Who is Tony? What is Positive Life?
Fresno County HIV Statistics
What is HIV and AIDS?
Nerdy tangents about HIV pathology
What should I do if I tested positive?
What does it mean if I am living with HIV?
Disclosing HIV status
Dating
Ways to protect my partner
3. Started as a trained facilitator for the PLUS (Positive
Living for Us) Program of Stop AIDS Project in 2006
Joined the California Statewide Training and
Education Program (CSTEP) Treatment Advisory
Board
Joined the HIV Advisory Board at Community
Regional Medical Center
Testified before the Presidential Committee on
HIV/AIDS
The creation of Positive Life
4. POSITIVE LIFE
Empower people living with HIV through-
Education
Fostering linkage to care
Creating a safe space and community for
all people who are affected by HIV
Our website:
http://www.poslife.org
5. HIV
What can you tell from this
bar chart?
Hint:
Who do you think are at
risk of HIV the most?
The proportion of new HIV cases by race in
Fresno County, 2014
6. White, not
hispanic, 30.9,
31%
Black or
African
American , 5.9,
6%
Asian, 10.7,
11%
hispanic or
latino, 51.9,
52%
Other, 0.6, 0%
Population break down of Fresno County, California, by
race 2014
White, not hispanic
Black or African
American
Asian
hispanic or latino
Other
Census, 2014
Now, did you change your
mind?
Hint:
Compare the HIV incidence
rate with the demographic
breakdown of Fresno County
8. HIV AIDS
What does HIV stand for?
What does AIDS stand for?
Is HIV and AIDS the same?
A person living with HIV does NOT necessarily have AIDS
HIV is a virus
AIDS is syndrome caused by virus, if left untreated
Therefore…
A person living with HIV can be very healthy, as long as they adhere to the treatment!
10. HIV
Blood
Transfusion
Sharing Needles
Semen
Unprotected anal or vaginal Sex
Pre-ejaculate
Vaginal fluid
Unprotected vaginal sex
Breast Milk Breast Feeding
Oral sex
Minimal risk, why?
11. Life course development of Virus
titer, CD4 cell number and anti-
gp120 titer during the HIV
infection
Can skip this section if you do
not want to go in depth
12.
13. POSITIVE
Linkage to care
Find a doctor, and get treatment
Get vaccinated for other diseases (e.g.
pneumonia)
Positive Life will assist you with the process, if
help is needed.
Staying in care
Taking your medication everyday and not missing a
dose.
Keeping your doctor appointments.
Create a support network.
Then Now
14. The market price of a one year supply of
Atripla will cost $31,200, that’s $2600/mo.
You can afford it through…
Private Insurance
A basic plan with Aetna would cost you a copay
about $30/mo.
Covered California
Medical
AIDS Drug Assistance Program
Co-Pay Cards (by the pharmaceutical
company)
15. HIV
What does Stigma mean? (Goffman, 1963)
What does it mean when I am HIV positive…
Structural Stigma
The law mandates self disclosure
Interpersonal Stigma
Ignorance and fear among others might lead to cruel
and unjust rejection and discrimination against you
16. HIV
You are always more powerful than you
realize!
HIV is not a punishment for immorality
Take your time and space to find answers
you are looking for
Educate and take good care of yourself
We cannot change the past, but we can
choose our future by forgiving ourselves
"Forgiveness is something we choose;
it only happens when someone
chooses it.”
17. RESILIENCE
Seek out for support!
Emotional support is essential to your survival!
Reach out to support group
Positive Life offers a support group every 3rd Tuesday
of the month from 6:30pm~7:30pm for HIV+ people
and people who are affected by HIV
You don’t have to tell everyone.
Don’t let HIV define who you are, take control and
empower yourself with absolute acceptance and
forgiveness.
18. There is no way of knowing how people will react…
So ask yourself before disclosing to someone:
Whom do I want to tell and why do I want them to know?
How much am I ready to share? How much are they ready to
hear?
How will disclosing my HIV status affect me and how will it
affect the people I tell?
Choose a place where it is comfortable for you to disclose
your status.
19. Disclosing your HIV status can be
stressful.
It can be challenging to find support
People will react differently.
When people react negatively…
Give them time and information to educate
them before
Do NOT take it personally
Keep yourself physically and mentally safe!
If threatened, call the National Domestic
Violence hotline at 800-799-SAFE
20. Your medical provider
It is recommended that you screen for other STD/STI as
well
Your current and past sexual partners
More information on the next slide…
If you use injection drugs…
Inform peers whom you shared needles with
Once again, you do NOT need to disclose with
everyone.
21. SEXUAL
If you are in a serious relationship…
Disclosing your HIV status can put a
strain on relationships
Keeping the news to yourself for too long is
not a good idea!
It is normal to feel nervous and scared.
Tell your partner to get tested
Practice safe sex!
Couple counseling might be beneficial
22. VIOLENTLY
Disclose in a semi-public place like a public park with
many people around
Consider disclosing with a third person present
Meet only in public with that person until you feel safe
Avoid exposing others to HIV without warning them
ahead of time.
23. DATING
You could be found guilty of a felony for not telling a
sexual partner you are HIV+ before having intimate
contact.
Stigma and fear against HIV is real!
Your HIV status will prevent some from wanting to see
you.
But again…
A person living with HIV can be very healthy and deserving
of many long and fulfilling relationships, as long as they
adhere to the treatment!
24. NOT
Your employer
People living with HIV are protected from job
discrimination
The law demands your employer to reasonably
accommodate your illnesses after disclosure.
25. STORY
MATTERS
Some people share their stories to…
Advocate for others
Educate neighbors, communities and churches
Some women find a purpose and self-esteem by
sharing their stories
Story telling can be empowering, but…
Consider how much of your story you are ready to
tell.
When facing a question that you are not ready to
answer, simply say “does it really matter?”
26. HIV
Before telling your children, ask yourself:
Will they be angry if you keep a secret?
Do they suspect something?
Are you sick?
Children might react differently, depending
on their age
Children need support too!
Give them a name, whom they can trust, to
talk to
www.kidstalkaids.org/program/index.html. Also see our
info sheet on Talking with Your Children about Your HIV
Status.
27. It is important to…
Get support from family and friends
Foster stronger bonds with loved ones
Adhering to your medication
Follow up with your doctor regularly
Concealment of stigma (e.g. living with HIV)
will lead to poorer health outcomes,
Empower yourself by disclosing your status
when you are ready.
No one will love you, if you stopped loving
yourself.
28.
29. Always use condoms!
So far, the most effective method in HIV
prevention
Always check the expiration date
Do NOT open the package with your
teeth
30. Use water based lube instead of silicon based
lube
Less odds of allergic reaction
Less odds of irritating the skin
Less likely to cause superficial bleeding
31. Less alcohol and substance use
Needle exchange programs
Get free and clean needles from your local
needle exchange programs.
Avoid needle sharing with others.
32. A way for people who do not have HIV to help
prevent HIV infection by taking a pill every day
It reduces the risk of HIV infection significantly,
when taken consistently.
Caution: PrEP does NOT adequately prevent other
STD/STIs!
33. Questions?
Feel free to contact Positive Life at:
support@poslife.org
info@poslife.org
By Tony Lane, CHP
Editor's Notes
I got started in the HIV/AIDS field back in 2006 when I was looking around at what services there were for HIV+ people. When I couldn’t find anything here in Fresno I went to San Francisco and ended up connecting with the STOP AIDS Project and their PLUS (Positive Living for Us) program which was an extensive 20hr HIV 101.
Positive Life was formed by five former Board Members of CRMC’s Specialty Health Clinic Advisory Board after that board had been disbanded.
In 2013, 65% (n=57) of the new HIV/AIDS cases were Hispanic/Latino, which is a large number
note that Hispanic/Latinos constitute 51.2% of the population in Fresno County.
Approximately 8% (n=7) of the new cases of HIV/AIDS were Black/African American, which is a concern because they only constitute 5% of the total population.
The human immunodeficiency virus,
Acquired immunodeficiency syndrome
HIV is a virus that gradually attacks the immune system, which is our body’s natural defense against other illnesses
AIDS is a syndrome caused by the HIV virus.4 It is when a person’s immune system is too weak to fight off many infections, and develops when the HIV infection is very advanced. This is the last stage of HIV infection where the body can no longer defend itself and may develop various diseases, infections and if left untreated, death.
Skin is the largest organ in our body. It is built to be the first gate of our body to resist the foreign agents (i.g. virus)
Mucous membrane and epithelial layers are considered more fragile and easier to break apart.
That is why unprotected anal sex is consider very risky for HIV transmission. Circumcision is considered to be protective against HIV transmission, as the head of penis is toughened and less permeable to infections.
Our saliva is very good with eliminating foreign agent, because there are plenty enzymes within the saliva itself to break down any potential toxins for our body
If acquired by sexual activity, the virus enters the body in infected macrophages in semen or vaginal secretions. Dendritic cells in the mucosal linings bind the virus shed by macrophages and carry it to the lymph nodes where CD4+ T4 cells become infected. During the course of the disease, the virus migrates to other cell types.
Initially, HIV infection produces a mild disease that is self-limiting. This is not seen in all patients and about 30% remain asymptomatic during the initial period of infection. In the period immediately after infection, virus titer rises (about 4 to 11 days after infection) and continues at a high level over a period of a few weeks (figure 4). The patient often experiences some mononucleosis-like symptoms (fever, rash, swollen lymph glands) but none of these is life-threatening. There is an initial fall in the number of CD4+cells and a rise in CD8+ cells but they quickly return to near normal. At this stage virus titers are very high with as many as one hundred million virus particles per milliliter of plasma.
During the first two weeks of infection two weeks, CD4+ cells in the lymphoid tissue if the alimentary tract decline. This has two results: Local immunodeficiency and chronic immune activation. Immune activation results from translocation of bacteria across the damage mucosa of the alimentary tract.
There is a "window period" of seronegativity during which an infected person does not give a positive western blot HIV test or ELISA, even though the viral load is high and the patient may exhibit some symptoms. This seronegative period can last for six months before seroconversion although the latter usually occurs between one and four weeks after infection.
Higher the viral load, the higher the transmission rate. IMPORTANT to get into treatment!
Getting into care is the most important thing that you can do. We call this “linkage to care”. You should get linked to an HIV Specialist, this can be through a private physician or specialty health clinic.
It is important to adhere to your medication, because HIV can become resistant against the entire class of the drug that you are taking.
A spoiled identity that devalue the person with disgrace.
The law mandates HIV positive people to disclose their status to their partners before any sexual contact. Any violation can be considered as punishable by law.
We all make mistakes in our life. Some are resolvable, some are not. When we face some irreversible mistakes, take a deep breath and move on. HIV is a loaded term: An ignorant world has wrongly stuffed those three letters full of shame and judgment
Having HIV is not a crime. HIV is just a virus that causes a disease. It does not discriminate. Anyone can get it.
There's no rule of thumb that can tell you how long you will need to come to terms with your HIV diagnosis. Some people need a few weeks or months; for others, it can take years.
So give yourself time. Everyone adjusts in his or her own way. Let yourself have the time and space you need to find the answers you're looking for.
"In the beginning, I couldn't forgive myself for getting HIV," remembers Heidi Nass, who was diagnosed in 1996. "I felt compassion toward others, regardless of what led them to their infection, but I could not find it for myself." This changed for Heidi when she spoke with a close female friend, who had gotten HIV long ago from using dirty needles when shooting drugs. Her friend counseled, "If you're looking for reasons to feel shame, you'll always be able to find them. At some point, though, you might want to look for something else ... like forgiveness."
Once you have taken the time to get used to your new status -- and this may take awhile -- an important step to take is to find someone you can confide in -- someone you can trust who will be there when you need them. Emotional support is essential for your survival. Although figuring out in whom to place that trust can be a difficult decision.
If you have no one in your immediate circle that you feel you can trust, there are many options either on the Internet or at a local HIV/AIDS organization (browse through these resources for one near you). Once you feel confident that you've got a base of support, you can begin to reach out to the people you weren't ready to talk to at first.
Of course, there is absolutely no reason to tell everyone you know that you have HIV. The only person you are obligated to reveal your status to is your sexual partner. It's no one else's business -- not your friends, not your family, not your boss or your coworkers.
Some people find that it's an important part of their own healing process to disclose their status to others, regardless of how they might react.
Ultimately, by forgiving yourself, giving yourself time to deal with your diagnosis and then seeking out support, you'll be able to get to a place where HIV is just another part of your life -- not something that defines your life.
Ed Viera Jr., who was diagnosed in 1987, says, "My advice to newly diagnosed people is to develop a support network. It's really important to have one -- to have a second and third family. In my case, my family turned their backs on me, closed all doors. I had to develop support networks by going to HIV support groups. Go to a library, just talk to people, get out there and stop being isolated."
Disclosure means telling someone that you are living with HIV (HIV+). Sharing your HIV status can help with the stresses of living with HIV. But whom to tell and how to tell them can be complicated and difficult decisions.
There is no one best way to tell someone. Similarly, there is no sure way to know how those you tell will react or whom they may choose to tell. To prepare, it may help to ask yourself a few questions:
Whom do I want to tell and why do I want them to know?
How much am I ready to share? How much are they ready to hear?
How will disclosing my HIV status affect me and how will it affect the people I tell?
Consider where you want the disclosure to take place. It could be at home, at a friend's house, or in a health care setting so that support is readily available. The important thing is that you choose a place that is comfortable for you.
Disclosing your HIV status can be stressful. While you may receive love and support from some of the people you tell, others may not be as accepting. Try to find someone that can support you through this difficult process. If you have not told any family or close friends yet, turn to your health care provider, social worker, counselor, or AIDS service organization (ASO).
Disclosing your HIV status will also have an effect on the people you tell. People will react differently to the news. Your friends and family may immediately embrace you and accept your diagnosis. Others may react negatively or need some time to process what you have told them. They may be scared – for you or for themselves -- and may need some information in addition to time to adjust.
Some people, especially sexual partners who may be afraid they have been infected, react with anger. If you feel threatened or unsafe, it is important that you get safe and stay safe. Call the National Domestic Violence hotline at 800-799-SAFE and check our info sheet on Domestic Violence.
Just like you, people you tell will need support. Try to leave them hotline numbers, brochures or books about HIV that they can look at later. Give them the addresses of websites that provide information (a good government site is at http://aids.gov/hiv-aids-basics/). Also let them know who else is aware of your status, so that they can go to each other for support.
Serious Relationship
If you are in a serious relationship, telling your partner is one of the first things you will probably think about. Many turn to their partners for comfort and support. However, some people worry that they will lose their partner's love when they disclose. It is normal to feel nervous, embarrassed, or even fearful of your partner's reaction.
Since you and your partner most likely have a sexual relationship, you do need to let them know that they may have been exposed to HIV and should get tested. Also, it is now even more important to practice safer sex.
Disclosing your HIV status can put a strain on the best of relationships. It is important for you to think about when and how to disclose. However, keeping the information to yourself for too long is probably not a good idea. If you find it difficult to decide when and how to tell your partner, it may be helpful to get some professional counseling.
. Find a place that is private enough to have a conversation, but public enough to get help if you need it.
The risk of violence may be greater if a person feels you knowingly put them at risk or lied to them
Women who are dating have to face the question of disclosure with each new relationship. Some women prefer to get the issue out into the open immediately. Others prefer to wait and see if the relationship is going to develop beyond casual dating.
Although many people know about safer sex and how HIV is transmitted, fear and stigma are still a reality. Your HIV status will prevent some from wanting to see you, while others will not be put off by the information.
In most cases, sharing your HIV status is a personal choice. However, in the case of sexual relationships, it can be a legal requirement. It is best if you disclose your status prior to having sex with anyone.
Not disclosing your HIV status in a sexual relationship can lead to criminal charges whether or not your partner becomes infected with HIV. In most states, the law requires that you disclose your HIV status before knowingly exposing or transmitting HIV to someone else. Penalties vary from state to state. In many states, you can be found guilty of a felony for not telling a sexual partner you are HIV+ before having intimate contact.
People with disabilities, including HIV, are protected from job discrimination under the Americans with Disabilities Act (ADA). However, you should think carefully before disclosing your HIV status at work. You do not have to tell your employer that you are HIV+. If you have not had any HIV-related symptoms or illnesses and are not on medications that are affecting your job performance, there is probably no need tell.
If HIV or your medications are interfering with your ability to work, it may be a good idea to privately disclose your status to your boss. You can ask for an adjustment in your schedule or workload so that you can continue to do your job. Because the law regards an HIV+ person as a disabled person, your employer is required to reasonably accommodate your needs if you are otherwise qualified to perform the essential duties of the job.
If you are planning to disclose at work for employee or benefits purposes (like reasonable accommodation, insurance, disability, or medical leave), contact an employee benefits counselor or an HIV or legal advocate before disclosing.
Women often choose to disclose their status to close friends and family members whom they trust. For many, telling those closest to them provides them with both emotional and practical support.
Some people decide to become more public and use their stories to advocate for others with the government or in the media. Others may disclose for educational purposes to neighbors, community and religious groups, schools, other HIV+ people, or healthcare providers. Many women find a sense of purpose and increased self-esteem by telling their story.
You may want to consider how much of your story you are ready to tell. Many people will ask you how you became infected. If you decide not to share that information, have a reply ready such as, "does it really matter?" or simply state that you are not ready to talk about that.
For moms/dads considering telling their children, it is important to ask yourself why you want to tell them:
Will they be angry if you keep a secret?
Do they suspect something?
Are you sick?
Children can react to the news of HIV in the family in many different ways. Older kids may be upset that you kept a secret from them. Younger children may just want to go back to their toys. Partial truths can be helpful when telling children. You may decide only to tell them as much as you consider appropriate for their age.
It is important to remember that kids need support, too. If you can, give them the name of another adult they can talk to, perhaps a family member or friend they can trust. Several books are available that deal with the issue of disclosure to children A good place to start is www.kidstalkaids.org/program/index.html. Also see our info sheet on Talking with Your Children about Your HIV Status.
There are some good reasons to tell people that you have HIV:
Getting support from family and friends, at the time of diagnosis and in the future
Fostering a sense of closeness with friends and loved ones
Reducing the risk of HIV transmission to others
Not having to live with the stress of keeping HIV a secret
Ensuring that you get the most appropriate care and treatment from your health care providers
Feeling empowered from disclosing
In close relationships, studies show that living with a secret, such as HIV, can be more emotionally harmful than the rejection that could result from disclosure. Many women who have kept a secret for a long time feel a sense of relief after telling.
However, telling other people that you have HIV can also have downsides. It is important to think carefully about whom you tell. Remember that once you disclose, you cannot take it back. ASOs and health care clinics can offer resources to guide you through the disclosure process.
Always use condoms, they will help to prevent the transmission of HIV and other STD’S (sexually transmitted diseases).
Pre-exposure prophylaxis, or PrEP, is a way for people who do not have HIV to help prevent HIV infection by taking a pill every day. The pill contains two medicines that are also used, in combination with other medicines, to treat HIV. When someone is exposed to HIV through sex or injection drug use, PrEP can help stop the virus from establishing a permanent infection.
When used consistently, PrEP has been shown to greatly reduce the risk of HIV infection in people who are at substantial risk. PrEP is much less effective when it is not taken consistently.
PrEP is a powerful HIV prevention tool, and can be combined with condoms and other prevention methods to provide even greater protection than when used alone. People who use PrEP must commit to taking the drug daily and seeing their health care provider every 3 months for HIV testing and other follow-up.